Our youngest son, Joey, was diagnosed with GBM in 2010 at the age of 17. Our way to a diagnosis was not overnight.
Our concerns started out with him always being tired, but I justified that away thinking he was going through a growth spurt. Then he started slurring his words more. He had speech issues and was in speech therapy, and his therapist shooed off my concerns insisting that if he focused on his speech, he spoke quite well, it seemed more like laziness in her mind. The school psychologist was concerned that he was depressed and contacted me. I didn’t feel he was depressed, but I was concerned so we paid a visit to his psychiatrist. She didn’t think he was depressed either.
I took him to the pediatrician, but nothing came up with any of the testing she did. I made an appointment with the neurologist but couldn’t get in until the following week. The next morning we were having breakfast out with my mother, and she noticed that when Joey smiled it was only half of his mouth going up in a smile. I assumed it was something like Bell’s Palsy. I contacted the neurologist again to see if we could get in sooner, but unfortunately, the soonest we could get in was for his scheduled appointment the following week. I was concerned and asked what we should do if anything else happened, and they told me to go directly to the ER.
At the neurologist the following week, we quickly discovered he could not do the finger-tapping test, and there were other concerns noted so he was scheduled for a stat MRI. He had been masking that his whole left side was not functioning for who knows how long. I don’t think he even realized the extent of weakness he had on that side of his body.
As he was getting dressed, the tech came out and informed me that the doctor wanted us to go to his office immediately. That’s when I knew something was seriously not okay. I did my very best to keep it together because I didn’t want to get Joey upset.
It was after hours at that point so the office, thank goodness, was empty of other patients. The mood, however, was somber at best. We were called in to see the doctor and given the news that there was a large tumor, perhaps even two in his brain. He contacted our pediatrician and let her know.
By the time we got home, she had already gotten us an appointment with one of the top brain surgeons in Los Angeles, and we were told to just show up at his office first thing the next morning and he would see us.
They could not definitively tell us exactly what kind of tumor it was without doing a biopsy, but they were pretty confident that it was GBM. Unfortunately, because of where it was located, they could not resect it. We would be limited to radiation and chemo. They would have a better idea of what chemo once they got the results back from the genetic testing that would be done.
After that, things moved very quickly. Unfortunately, even though he had many things in his favor — he was young, in good health, and had the right genetic makeup of the tumor which should have responded well to treatment — he wasn’t one of the lucky ones.
Fifteen months later, at the age of 18, he passed away. At the time of diagnosis, he was too young for the clinical trials that were going on, and we weren’t able to get compassionate use approved. He did get into a trial in Minnesota, but by the time he was scheduled to fly out, the tumor had progressed too far, and was disqualified.
Joey kept a really positive outlook for most of his remaining time. He never felt sorry for himself or questioned why him. He didn’t want other people pitying him. The biggest thing he wanted was enough time to do something that would leave the world in a better place because of something he did.
I still stay involved with the brain tumor community. Not only because of friendships made but also to be of support to other families and to be a voice advocating for more funding to combat GBM. I would like to see compassionate use expanded so that others, like Joey, may have access to promising treatment. Last year, I virtually participated in my first Head to the Hill. It was a great experience.
We made a video to highlight his life.
